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Thread: Help me please !

  1. #11
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    Quote Originally Posted by Kaysphotography View Post
    They have him undiagnosed , right now all behind his ear started in a rash , I'm so worried but they say his age is ruling out wegeners , but its the only thing I can find the remotely comes close to what is going on , they did a chest scan and it always comes back he has a chest infection of some sort , his ct on his head came back find so they say don't worry about it , my peds doctor said if he was 14 or older she would diagnose it with wegeners but his age there's no way :/ my poor boy is always bleeding from his sinus areas (ears,nose) and the marks are like broken blood vessels bleeding out into the top layer of skin , also blood in his urine that you can see, but they said kidney infection ...
    If they can't diagnose it and treat it will they help you by referring you to another treatment facility that might have the skills and expertise to diagnose him correctly and start appropriate treatment. If it were my child we would go to the Mayo Clinic since they are known as world class medical facility that specializes in cases hard to diagnose or treat. The next best option to a world class medical facility is finding the largest medical facility affiliated with the best med school that you can reach. University med facilities seem to like a challenge and will be most interested in any unusual medical problem. I also think they will be highly motivated to obtain some relief for the child and family too.

    Wegs can imitate a lot of different medical problems which is part of the reason it is often hard to diagnose, but if they think it is like GPA, are they willing to start treating it like GPA. I understand the need to be very careful about any treatment for a child that young so i would want some expert pediatrician involved in any treatment.
    Last edited by drz; 10-25-2013 at 08:20 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

  2. #12
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    Oh, Kay, I'm so sorry to hear about everything you are currently going through with your son. I had most of those symptoms, so it sounds like it could possibly be wegs. I don't think the doctor should discard it as a possibility just because of his young age. But like Michelle said it could also be something else. I would recommend finding a doctor that has experience with WG or, if possible, make a trip to Mayo or Cleveland Clinic. I hope you have an answer soon so he can be on his way to feeling better. Please keep us posted on your son's health. Sending prayers your way.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

  3. #13
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    Noah (my son) he was already tested for that and does not have it , today then did a skin biopsy to check the vessels , he is starting to get sores on and in his mouth ? And has a blister looking thing in his nose

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    The C-ANCA test would tell if he has WG, a specialist in Vasculitis, or other rheumatic diseases would do that test.

  5. #15
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    I believe I have read somewhere of a child almost as young as your son who had WG. I would not rule it out, but would also consider what the others have said about other possible conditions. It appears you must be very persistent. It is hard to imagine them sending you home with a child that young in the shape he is in. They need to try harder and to quit using the excuse that he is too young for Wegener's. If it isn't WG, they need to find out what it is instead of just giving up on him. They could contact one of the medical consultants on the Vasculitis Foundation website, under Support, and ask them if this child could possibly have Wegener's, or if they won't, perhaps you could do it yourself. This sounds like an emergency that has been going on too long. I'm glad you found our forum and I wish we could be of more help. Please let us know how things go. I'll keep you in my thoughts and prayers.
    Anne, dx'ed April 2011

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    He had his biopsy with on location freezing and today woke up sick with a high fever and bloody ear , his head hurts and his legs are sore to the touch we are takin him to the er now

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    Dear Kay,
    my heart and my praying are with you and Noah.
    it is good decision to take him to er. don't let them send him home without diagnosis and treatment.
    please update us. we are with you. holding your hand and praying.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  8. #18
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    Prayers are being sent from Australia too Kay.

    Good luck at the ER and, if it was me, there is no way my child would be going home in the sick state he is in.
    Put your foot down - do what ever you can.

    I hope things get sorted out quickly
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Best wishes for some good news and quick recovery.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Kay (?) - YES IT CAN BE. Please contact me - I will pm you my info - I can put you in touch with a couple of moms who have young children with wegs. Also - the Pediatric Rheumatologists of Children's Hospital Los Angeles have many Wegener's cases & can consult with your doc - ask your doc to do so (immediately.)

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